1 00:00:00,960 --> 00:00:03,279 And, again, this idea of community strength by 2 00:00:03,279 --> 00:00:05,120 being in the space with someone who's had 3 00:00:05,120 --> 00:00:07,279 a similar experience that you've had. That's the 4 00:00:07,279 --> 00:00:09,139 part that I felt like was so powerful 5 00:00:09,199 --> 00:00:10,980 here is I'm not just having an opportunity 6 00:00:11,119 --> 00:00:12,880 to to share my story and what I 7 00:00:12,880 --> 00:00:14,559 have going on, but to know that I'm 8 00:00:14,559 --> 00:00:16,234 showing up in a space where other people 9 00:00:16,234 --> 00:00:18,255 have had similar things going on. 10 00:00:20,954 --> 00:00:23,614 Welcome to Boundless Bee, the Hemophilia Bee Podcast, 11 00:00:23,675 --> 00:00:25,835 the podcast standing with you from a family 12 00:00:25,835 --> 00:00:28,255 like yours, presented by the Coalition for Hemophilia 13 00:00:28,474 --> 00:00:30,780 Bee and in partnership with Balancing Life's Issues. 14 00:00:31,179 --> 00:00:33,679 Today, we're talking with Whitley Grant Goodman, facilitator, 15 00:00:33,979 --> 00:00:36,460 advocate, and passionate community builder who led the 16 00:00:36,460 --> 00:00:39,740 Stronger Together session in Charlotte, North Carolina during 17 00:00:39,740 --> 00:00:41,820 this year's Meeting on the Road series, a 18 00:00:41,820 --> 00:00:43,899 series that takes place all over the country 19 00:00:43,899 --> 00:00:46,885 offering free workshops to CHB members as well 20 00:00:46,885 --> 00:00:48,965 as child care during those sessions so the 21 00:00:48,965 --> 00:00:51,704 adults can be 100% engaged in community building. 22 00:00:51,924 --> 00:00:53,924 Not only that, the coalition can offer gas 23 00:00:53,924 --> 00:00:54,825 and toll reimbursements 24 00:00:55,204 --> 00:00:57,284 to make your travel easier. And if you're 25 00:00:57,284 --> 00:00:58,885 driving more than two hours, you can even 26 00:00:58,885 --> 00:01:00,725 apply for a hotel stay to help make 27 00:01:00,725 --> 00:01:02,689 the trip more manageable. The goal is to 28 00:01:02,689 --> 00:01:04,930 ensure everyone has the opportunity to attend these 29 00:01:04,930 --> 00:01:07,090 special events. And we're so excited to have 30 00:01:07,090 --> 00:01:09,090 doctor Whitley here to talk to us about 31 00:01:09,090 --> 00:01:11,010 her session that happened that day. Welcome to 32 00:01:11,010 --> 00:01:11,590 the podcast. 33 00:01:11,969 --> 00:01:13,890 Thank you. Thank you. So happy to be 34 00:01:13,890 --> 00:01:16,375 here with you this morning, having this great 35 00:01:16,375 --> 00:01:19,334 conversation, doing some reflection around my time with 36 00:01:19,334 --> 00:01:21,254 the group. Can you just start off with 37 00:01:21,254 --> 00:01:23,495 kind of, like, what was that experience like? 38 00:01:23,495 --> 00:01:24,614 What did it mean to you to be 39 00:01:24,614 --> 00:01:26,295 there part of that series and, like, the 40 00:01:26,295 --> 00:01:27,895 energy in the room? Just just talk to 41 00:01:27,895 --> 00:01:28,650 us about that. 42 00:01:29,209 --> 00:01:30,969 Yeah. So it really meant so much to 43 00:01:30,969 --> 00:01:32,750 me. You know, since COVID 44 00:01:33,209 --> 00:01:35,450 has happened and we've gone from doing so 45 00:01:35,450 --> 00:01:37,930 many virtual spaces to now being able to 46 00:01:37,930 --> 00:01:40,650 be back more in person, it felt really 47 00:01:40,650 --> 00:01:42,490 good to be able to join and be 48 00:01:42,490 --> 00:01:44,025 a part of this community because I was 49 00:01:44,025 --> 00:01:46,424 stepping into a space where people seem really 50 00:01:46,424 --> 00:01:48,905 connected by something deeper than just their more 51 00:01:48,905 --> 00:01:51,305 than diagnosed their diagnosis. They're really feeling like 52 00:01:51,305 --> 00:01:53,305 they're stepping into a family. So I felt 53 00:01:53,305 --> 00:01:56,025 very honored to be trusted with their stories, 54 00:01:56,025 --> 00:01:56,765 their questions, 55 00:01:57,064 --> 00:01:59,280 their hopes. They really reminded me that when 56 00:01:59,359 --> 00:02:00,959 when you create a space where people feel 57 00:02:00,959 --> 00:02:03,599 seen and supported, real real healing and real 58 00:02:03,599 --> 00:02:06,719 connection connection can happen. So it was just 59 00:02:06,719 --> 00:02:08,879 a really great experience and so happy that 60 00:02:08,879 --> 00:02:11,120 I had the opportunity to to join and 61 00:02:11,120 --> 00:02:12,020 be able to 62 00:02:12,435 --> 00:02:15,155 really not necessarily share my expertise, but kinda 63 00:02:15,155 --> 00:02:16,215 just help facilitate 64 00:02:16,515 --> 00:02:19,235 area that they already had expertise in. Yeah. 65 00:02:19,235 --> 00:02:21,075 It's interesting you say that. Can you speak 66 00:02:21,075 --> 00:02:22,435 a little more to that? I think the 67 00:02:22,435 --> 00:02:23,415 importance of 68 00:02:23,795 --> 00:02:26,594 hemophilia b community to come together in person 69 00:02:26,594 --> 00:02:27,335 when possible. 70 00:02:28,129 --> 00:02:30,129 Yeah. Yeah. So I will say this. I 71 00:02:30,129 --> 00:02:32,310 think there's just a different level of connection 72 00:02:32,370 --> 00:02:34,209 that can take place when you're in person. 73 00:02:34,209 --> 00:02:35,810 Right? So really being able to have in 74 00:02:35,810 --> 00:02:39,090 that warm, open, and inviting energy where people 75 00:02:39,090 --> 00:02:41,324 can laugh and talk and share some of 76 00:02:41,324 --> 00:02:44,044 their past experiences and just being honest and 77 00:02:44,044 --> 00:02:45,884 vulnerable in a way that you don't always 78 00:02:45,884 --> 00:02:48,365 see. And I definitely understand the pieces about 79 00:02:48,365 --> 00:02:50,444 still, of course, having virtual options. Right? Because 80 00:02:50,444 --> 00:02:51,585 it helps from accessibility 81 00:02:51,965 --> 00:02:53,930 standpoint. But I think it makes sense that 82 00:02:53,930 --> 00:02:56,169 they're offering both. So they talked to even 83 00:02:56,169 --> 00:02:58,269 in that space, they talked about having virtual 84 00:02:58,409 --> 00:03:00,409 spaces that they get together in as well, 85 00:03:00,409 --> 00:03:02,650 but then having these opportunities to meet in 86 00:03:02,650 --> 00:03:05,370 person, I think, just as an additional level 87 00:03:05,370 --> 00:03:07,129 of connection that you might not be able 88 00:03:07,129 --> 00:03:09,094 to get in a online space. 89 00:03:09,634 --> 00:03:11,715 Yeah. That's alright. That's so so great to 90 00:03:11,715 --> 00:03:13,354 hear. So I guess tell us about your 91 00:03:13,474 --> 00:03:15,634 the stronger together session that you led, and 92 00:03:15,634 --> 00:03:17,314 what was what was the heart behind that 93 00:03:17,314 --> 00:03:17,814 message? 94 00:03:18,114 --> 00:03:20,775 Mhmm. Mhmm. Yeah. So the heart was simple. 95 00:03:21,150 --> 00:03:22,909 It just talked about this, the important of 96 00:03:22,909 --> 00:03:24,990 connection. So the goal was to kinda remind 97 00:03:24,990 --> 00:03:26,909 people that the how much strength there is 98 00:03:26,909 --> 00:03:28,909 in community. So when people were able to 99 00:03:28,909 --> 00:03:30,849 share their victories, their struggles, 100 00:03:31,150 --> 00:03:33,490 and their lessons, it creates a ripple effect. 101 00:03:33,814 --> 00:03:35,834 So others maybe feel less isolated. 102 00:03:36,134 --> 00:03:37,275 Hopes get restored. 103 00:03:37,574 --> 00:03:39,974 And the session was really about lifting up 104 00:03:39,974 --> 00:03:43,574 that collective strength in community. So just again, 105 00:03:43,574 --> 00:03:45,574 I think it just helps when maybe you're 106 00:03:45,574 --> 00:03:47,740 going through or experiencing something or you have 107 00:03:47,740 --> 00:03:50,060 experienced something. Now being able to hear somebody 108 00:03:50,060 --> 00:03:51,759 who say, oh, I had a similar experience. 109 00:03:51,979 --> 00:03:54,219 Here's how I navigated it. Here's some things 110 00:03:54,219 --> 00:03:56,219 that were helpful for me. So I think 111 00:03:56,219 --> 00:03:58,060 that's kind of the ripple effect that went 112 00:03:58,060 --> 00:03:58,560 outwards 113 00:03:59,099 --> 00:04:01,784 present throughout the room by everybody being able 114 00:04:01,784 --> 00:04:04,105 to give feedback and share their experiences just 115 00:04:04,105 --> 00:04:06,284 about how the importance of community. 116 00:04:06,745 --> 00:04:08,185 Yeah. And I think a little bit of 117 00:04:08,185 --> 00:04:09,625 what I'm hearing is, like, this idea of 118 00:04:09,625 --> 00:04:11,865 shared experience. Does that make sense? Mhmm. Definitely. 119 00:04:11,865 --> 00:04:13,705 Can you talk to us about the importance 120 00:04:13,705 --> 00:04:14,685 of shared experience? 121 00:04:15,300 --> 00:04:17,379 Yeah. So I think the importance of shared 122 00:04:17,379 --> 00:04:19,699 experience really comes down to the fact that 123 00:04:19,699 --> 00:04:21,860 sometimes no matter how much you try to 124 00:04:21,860 --> 00:04:24,580 share your story with someone, people may not 125 00:04:24,580 --> 00:04:27,220 be able to understand quite understand or grasp 126 00:04:27,220 --> 00:04:29,514 unless it's something that they have also experienced 127 00:04:29,514 --> 00:04:31,435 and been through. So there's power in being 128 00:04:31,435 --> 00:04:34,175 able to share your story and being vulnerable 129 00:04:34,235 --> 00:04:35,995 with others, but it's just a different level 130 00:04:35,995 --> 00:04:36,654 of vulnerability. 131 00:04:36,955 --> 00:04:39,194 And, again, this idea of community strengths by 132 00:04:39,194 --> 00:04:41,035 being in the space with someone who's had 133 00:04:41,035 --> 00:04:43,430 a similar experience that you've had. So that's 134 00:04:43,430 --> 00:04:45,029 the part that I felt like was so 135 00:04:45,029 --> 00:04:47,110 powerful here is just that I'm not just 136 00:04:47,110 --> 00:04:49,430 having an opportunity to to share my story 137 00:04:49,430 --> 00:04:51,029 and what I have going on, but to 138 00:04:51,029 --> 00:04:52,470 know that I'm showing up in a space 139 00:04:52,470 --> 00:04:55,270 where other people too have had similar things 140 00:04:55,270 --> 00:04:56,805 going on. So just a different level of 141 00:04:57,044 --> 00:05:00,324 understanding, community building, strength building. It it's just 142 00:05:00,324 --> 00:05:02,324 it's just a whole another level when somebody 143 00:05:02,324 --> 00:05:05,064 else has had that same or similar experience. 144 00:05:05,685 --> 00:05:07,604 Yeah. Absolutely. So what do you what do 145 00:05:07,604 --> 00:05:09,604 you think most resonated with those who were 146 00:05:09,604 --> 00:05:11,865 there? Like, were there any themes or reactions 147 00:05:12,004 --> 00:05:13,339 that, you know, surprised 148 00:05:14,120 --> 00:05:15,800 you? Yeah. I think the main thing just 149 00:05:15,800 --> 00:05:18,539 people being open up about their emotional side, 150 00:05:18,599 --> 00:05:21,560 not just their medical journey. There was some 151 00:05:21,560 --> 00:05:24,039 caregiver caregiver strength that happened there as well. 152 00:05:24,039 --> 00:05:25,659 That was, like, a recurrent theme. 153 00:05:26,185 --> 00:05:28,264 A lot of honesty in the room was 154 00:05:28,264 --> 00:05:30,345 a reoccurring theme. So I don't even know 155 00:05:30,345 --> 00:05:32,665 if it was much so surprising because as 156 00:05:32,665 --> 00:05:34,904 a therapist, I've seen vulnerability in so many 157 00:05:34,904 --> 00:05:37,144 different spaces, but it was just good to 158 00:05:37,144 --> 00:05:39,305 see it in another space where like, it 159 00:05:39,305 --> 00:05:41,949 just really, for me just continue to even 160 00:05:41,949 --> 00:05:42,849 share the importance 161 00:05:43,469 --> 00:05:45,089 of again, with this community building, 162 00:05:45,469 --> 00:05:47,709 being in shared spaces with people with similar 163 00:05:47,709 --> 00:05:49,949 experience and just how important it was. So 164 00:05:49,949 --> 00:05:51,949 just how quickly even trust was formed. So 165 00:05:51,949 --> 00:05:54,189 I'm not a 100% sure what activities were 166 00:05:54,189 --> 00:05:56,074 taking place before I led. I came in, 167 00:05:56,074 --> 00:05:57,275 but it seemed like it was a lot 168 00:05:57,275 --> 00:05:58,735 of trust already formed 169 00:05:59,115 --> 00:06:00,795 before I even got there. So it was 170 00:06:00,795 --> 00:06:01,615 just, it was 171 00:06:01,995 --> 00:06:04,555 so just refreshing to see how quickly people 172 00:06:04,555 --> 00:06:06,014 were able to share their experiences. 173 00:06:06,715 --> 00:06:08,634 It's just in such a quicker spaces. Like 174 00:06:08,634 --> 00:06:10,860 they had already established that trust that some 175 00:06:10,860 --> 00:06:13,199 people really need before they start being vulnerable. 176 00:06:13,500 --> 00:06:14,860 So it was just that was probably the 177 00:06:14,860 --> 00:06:17,180 biggest surprise to me, like, how quickly trust 178 00:06:17,180 --> 00:06:19,120 was formed with people being able to share 179 00:06:19,259 --> 00:06:20,080 their experiences. 180 00:06:20,620 --> 00:06:22,300 Yeah. Absolutely. You know, as someone who has 181 00:06:22,300 --> 00:06:23,819 traveled to some of these events, you know, 182 00:06:23,819 --> 00:06:25,764 I've I've seen that, you know, in real 183 00:06:25,764 --> 00:06:27,764 time, and it's really it really, really impressive 184 00:06:27,764 --> 00:06:29,764 to see how the community comes together so 185 00:06:29,764 --> 00:06:31,365 quickly. So what were some of the most 186 00:06:31,365 --> 00:06:33,305 powerful stories you heard during these sessions? 187 00:06:34,245 --> 00:06:37,464 Yeah. So one person had talked about advocating 188 00:06:37,525 --> 00:06:39,145 for their child in 189 00:06:39,449 --> 00:06:41,069 a hospital settings, 190 00:06:41,449 --> 00:06:44,009 I feel like it was powerful because it 191 00:06:44,009 --> 00:06:46,170 just brought it with that. And again, I 192 00:06:46,170 --> 00:06:48,090 hate to keep reemphasizing, but that's the point 193 00:06:48,090 --> 00:06:50,490 that we're talking about today is community building. 194 00:06:50,490 --> 00:06:52,330 But I think just having that piece about 195 00:06:52,330 --> 00:06:55,214 someone sharing about the advocacy standpoint 196 00:06:55,595 --> 00:06:59,454 also helped other people understand how necessary advocacy 197 00:06:59,514 --> 00:07:02,314 can be and why it is needed in 198 00:07:02,314 --> 00:07:04,735 different, especially in hospital environments. 199 00:07:05,035 --> 00:07:06,954 Other people talked about so one of the 200 00:07:06,954 --> 00:07:09,214 things I opened up with a icebreaker about 201 00:07:09,399 --> 00:07:11,319 maybe your favorite person that you feel like 202 00:07:11,319 --> 00:07:13,099 is your support system. 203 00:07:13,959 --> 00:07:16,699 That someone in your support system and everybody 204 00:07:17,319 --> 00:07:19,959 was just naming different folks who were like 205 00:07:19,959 --> 00:07:22,360 their main support person. And then just really 206 00:07:22,360 --> 00:07:24,305 the laughter that came with how common. Okay. 207 00:07:24,305 --> 00:07:26,144 Some people had their mom, some people would 208 00:07:26,144 --> 00:07:28,544 notate a sibling. Other people noted, notated a 209 00:07:28,544 --> 00:07:30,384 best friend. So I think that was just 210 00:07:30,384 --> 00:07:32,225 good too, to see that commonality and just 211 00:07:32,225 --> 00:07:33,985 being able to share what else do we 212 00:07:33,985 --> 00:07:37,524 have in common besides maybe a diagnosis or 213 00:07:37,584 --> 00:07:39,600 our treatment approach. Like, what how do we 214 00:07:39,600 --> 00:07:41,360 view community? And I felt like that was 215 00:07:41,360 --> 00:07:42,580 another powerful 216 00:07:43,040 --> 00:07:45,540 story for connection because it just bought humor 217 00:07:45,759 --> 00:07:47,759 and and it bought laughter. It just giving 218 00:07:47,759 --> 00:07:50,240 people an opportunity to see, okay, we have 219 00:07:50,240 --> 00:07:52,194 more things in common. So that felt like 220 00:07:52,194 --> 00:07:53,475 that was some of the things that kinda 221 00:07:53,475 --> 00:07:55,235 stuck out. And I feel like, again, when 222 00:07:55,235 --> 00:07:56,675 we go back to themes, there's the idea 223 00:07:56,675 --> 00:07:59,235 around advocacy and then who are the persons 224 00:07:59,235 --> 00:08:00,754 in our lives that are a part of 225 00:08:00,754 --> 00:08:02,055 our main support system. 226 00:08:02,595 --> 00:08:04,514 Yeah. And, yeah, can can we talk a 227 00:08:04,514 --> 00:08:06,850 little more about advocacy? Because I know it 228 00:08:06,850 --> 00:08:09,410 could be a very kind of scary word 229 00:08:09,410 --> 00:08:11,649 for people. It's like I know for me, 230 00:08:11,649 --> 00:08:13,970 historically, it it brings up ideas of conflict 231 00:08:13,970 --> 00:08:15,810 and, like, conflict management. That's, like, one of 232 00:08:15,810 --> 00:08:17,910 the things I have to deal with. Mhmm. 233 00:08:18,129 --> 00:08:20,087 But, you know, advocacy doesn't necessarily mean marching 234 00:08:20,087 --> 00:08:20,238 to Washington, DC to speak to a senator. 235 00:08:20,238 --> 00:08:20,610 Right? It can be as small as in 236 00:08:20,610 --> 00:08:21,110 a 237 00:08:22,345 --> 00:08:24,425 a senator. Right? It can be as small 238 00:08:24,425 --> 00:08:26,985 as in a hospital room or even going 239 00:08:26,985 --> 00:08:28,584 to a Meetings on the Road event to 240 00:08:28,584 --> 00:08:30,425 share your story. So can you talk to 241 00:08:30,425 --> 00:08:31,944 us about kind of how that lives on 242 00:08:31,944 --> 00:08:32,605 a spectrum? 243 00:08:33,304 --> 00:08:35,082 Yes. Yes. Yes. And I think what you're 244 00:08:35,082 --> 00:08:35,219 saying is is so powerful because, like you 245 00:08:35,219 --> 00:08:36,044 said, a lot some people are 246 00:08:36,950 --> 00:08:38,950 powerful because like you said, a lot some 247 00:08:38,950 --> 00:08:41,029 people are protesters. Right? Some people are the 248 00:08:41,029 --> 00:08:43,029 folks who like to maybe go out in 249 00:08:43,029 --> 00:08:45,190 the in the streets with signs and things 250 00:08:45,190 --> 00:08:47,509 like that, but other folks are folks who 251 00:08:47,509 --> 00:08:49,830 wanna advocate in different avenues. And you're right. 252 00:08:49,830 --> 00:08:51,589 Even being able to come into a space 253 00:08:51,589 --> 00:08:53,714 and share, okay. Here's how I showed up 254 00:08:53,774 --> 00:08:56,034 in a hospital room and a doctor's appointment. 255 00:08:56,414 --> 00:08:58,815 Here's what I did, and here's maybe another 256 00:08:58,894 --> 00:09:00,894 some tips that you can also do. So 257 00:09:00,894 --> 00:09:02,574 I think even as you think about from, 258 00:09:02,574 --> 00:09:03,074 like, 259 00:09:04,029 --> 00:09:06,750 especially a medical standpoint, like being able to 260 00:09:06,750 --> 00:09:09,149 educate yourself on everything that you have experienced, 261 00:09:09,149 --> 00:09:13,070 so symptoms, medication, past diagnosis, allergies, things like 262 00:09:13,070 --> 00:09:15,309 that, knowing when to speak up. Like, I 263 00:09:15,309 --> 00:09:16,750 tell some of my even some of my 264 00:09:16,750 --> 00:09:18,589 clients in the work that I do, sometimes 265 00:09:18,589 --> 00:09:21,064 when you think about self advocacy, the hesitation 266 00:09:21,125 --> 00:09:22,884 is because you can feel like it's going 267 00:09:22,884 --> 00:09:25,444 to be confrontational or conflict. So you might 268 00:09:25,444 --> 00:09:27,204 even wanna practice in advance. What are a 269 00:09:27,204 --> 00:09:29,044 couple of things that you can say to 270 00:09:29,044 --> 00:09:30,884 follow-up, especially if you don't understand? Because I 271 00:09:30,884 --> 00:09:32,564 think a lot of times, even in our 272 00:09:32,564 --> 00:09:35,929 medical communities, medical staff could use maybe verbiage 273 00:09:36,309 --> 00:09:38,470 that we don't quite understand. So being able 274 00:09:38,470 --> 00:09:40,549 to ask follow-up questions, like, what are all 275 00:09:40,549 --> 00:09:43,269 our options here? What happens if we choose 276 00:09:43,269 --> 00:09:45,669 the way? I like a second opinion, things 277 00:09:45,669 --> 00:09:47,904 like that. So it doesn't feel too overwhelming 278 00:09:47,904 --> 00:09:49,585 when you are in these moments where you 279 00:09:49,585 --> 00:09:51,904 feel like you need to advocate for yourself, 280 00:09:51,904 --> 00:09:54,225 but you might have some some hesitation in 281 00:09:54,225 --> 00:09:56,305 doing so. So I think again, like you 282 00:09:56,305 --> 00:09:58,705 said, advocacy can look like showing up in 283 00:09:58,705 --> 00:10:00,945 different social media spaces. It can look like 284 00:10:00,945 --> 00:10:02,940 joining a group site these and being able 285 00:10:02,940 --> 00:10:04,860 to come together and figuring out what, maybe 286 00:10:04,860 --> 00:10:06,460 what are the two or three main themes 287 00:10:06,460 --> 00:10:08,379 that we need from our group. And what 288 00:10:08,379 --> 00:10:10,779 I most learned recently from, event that I 289 00:10:10,779 --> 00:10:12,700 just went to is being in touch with 290 00:10:12,700 --> 00:10:15,740 whoever your local politicians are and how important 291 00:10:15,740 --> 00:10:18,059 that is. So for example, for this community, 292 00:10:18,059 --> 00:10:19,554 thinking about maybe the two or three issues 293 00:10:19,554 --> 00:10:21,554 that you feel like are not paid attention 294 00:10:21,554 --> 00:10:23,315 to enough and being able to go directly 295 00:10:23,315 --> 00:10:25,875 to those folks who have control, who are 296 00:10:25,875 --> 00:10:27,875 like your local politicians. So that's something that 297 00:10:27,875 --> 00:10:29,475 I'm going to start doing myself too, because 298 00:10:29,475 --> 00:10:31,830 I'd never really thought about how to advocate 299 00:10:31,889 --> 00:10:34,529 in these smaller political spaces, but I think 300 00:10:34,529 --> 00:10:36,049 the all of these things are important, and 301 00:10:36,049 --> 00:10:38,230 it still goes back to this idea of 302 00:10:38,450 --> 00:10:41,089 we are stronger in numbers. So, again, using 303 00:10:41,089 --> 00:10:43,330 that community piece when it comes to advocacy 304 00:10:43,330 --> 00:10:44,789 is gonna be very important. 305 00:10:45,455 --> 00:10:47,295 And I really liked how you said you 306 00:10:47,295 --> 00:10:49,455 kinda highlighted the local piece there. Right? Because 307 00:10:49,774 --> 00:10:52,335 Mhmm. That's certainly less daunting, and you're probably 308 00:10:52,335 --> 00:10:54,335 more likely to get a response, like, on 309 00:10:54,335 --> 00:10:55,774 that level. Like, I know I live in 310 00:10:55,774 --> 00:10:58,095 a, you know, a village of about, you 311 00:10:58,095 --> 00:10:59,154 know, 10,000 312 00:10:59,669 --> 00:11:01,750 people here. And, you know, there there was 313 00:11:01,750 --> 00:11:03,750 an issue that I was feeling needed some 314 00:11:03,830 --> 00:11:05,049 to be addressed. So 315 00:11:05,509 --> 00:11:07,669 just on a whim, I just shot an 316 00:11:07,669 --> 00:11:10,230 email to the town supervisor thinking, like, he's 317 00:11:10,230 --> 00:11:11,429 not gonna get back to me, and he 318 00:11:11,429 --> 00:11:13,225 emailed me back. Right? And I think he 319 00:11:13,225 --> 00:11:15,545 accidentally included his personal email, which is, you 320 00:11:15,545 --> 00:11:16,845 know, funny on that level. 321 00:11:17,625 --> 00:11:20,105 But, again, to your point, it doesn't have 322 00:11:20,105 --> 00:11:21,404 to feel like this overwhelming 323 00:11:22,024 --> 00:11:23,245 I'm marching experience. 324 00:11:24,024 --> 00:11:25,304 Be but the other thing I wanted you 325 00:11:25,304 --> 00:11:26,769 to maybe talk about is I know you 326 00:11:26,769 --> 00:11:29,589 had mentioned, like, some caregivers had shared stories, 327 00:11:30,529 --> 00:11:32,289 about their experience. And what what do you 328 00:11:32,289 --> 00:11:34,710 think they took away from, the community? 329 00:11:35,490 --> 00:11:37,429 Because I think this idea of advocacy 330 00:11:38,129 --> 00:11:39,589 can also be about self 331 00:11:39,934 --> 00:11:41,375 advocacy. Right? Like, when do I need a 332 00:11:41,375 --> 00:11:42,815 break? When do I need to take care 333 00:11:42,815 --> 00:11:43,394 of myself? 334 00:11:43,774 --> 00:11:44,274 Mhmm. 335 00:11:44,975 --> 00:11:47,695 Mhmm. Yeah. Yeah. So I think I feel 336 00:11:47,695 --> 00:11:48,995 like folks who are caregivers 337 00:11:49,774 --> 00:11:52,200 in this space also probably had a an 338 00:11:52,200 --> 00:11:54,600 opportunity to feel seen and heard. And it's, 339 00:11:54,600 --> 00:11:56,040 it's just so funny that we're having this 340 00:11:56,040 --> 00:11:58,040 conversation today. Cause I see so many things 341 00:11:58,040 --> 00:11:59,399 pop on social media and I don't know 342 00:11:59,399 --> 00:12:01,160 if it's algorithms and then it, but I 343 00:12:01,160 --> 00:12:03,000 just saw something the other day about how 344 00:12:03,000 --> 00:12:05,000 to support people who are caregivers. Cause a 345 00:12:05,000 --> 00:12:07,845 lot of times people will minimize the experiences 346 00:12:07,904 --> 00:12:09,904 of folks who are caregivers and that they 347 00:12:09,904 --> 00:12:10,644 don't understand 348 00:12:11,105 --> 00:12:11,605 how 349 00:12:12,544 --> 00:12:16,225 maybe difficult that position can be and just 350 00:12:16,225 --> 00:12:18,304 how to support folks who are caregivers. So 351 00:12:18,304 --> 00:12:19,829 just being able to to check-in 352 00:12:20,289 --> 00:12:22,370 and ask how things are going and be 353 00:12:22,370 --> 00:12:24,209 able to really just check-in on not only 354 00:12:24,209 --> 00:12:26,610 the person they're caregiving for, but maybe also 355 00:12:26,610 --> 00:12:29,169 paying attention to those, those symptoms as well. 356 00:12:29,169 --> 00:12:31,089 What the caregiver is also experiencing. So if 357 00:12:31,089 --> 00:12:33,014 you're a person who's listening and you are 358 00:12:33,014 --> 00:12:34,615 wanting to figure out how do you support 359 00:12:34,615 --> 00:12:36,394 people that you are know who are caregivers 360 00:12:36,694 --> 00:12:38,615 checking in on how they're feeling as well. 361 00:12:38,615 --> 00:12:39,975 And then I think for people who are 362 00:12:39,975 --> 00:12:42,375 caregivers in that space, it was also again 363 00:12:42,375 --> 00:12:45,815 for that community aspect of feeling affirm. Because 364 00:12:45,815 --> 00:12:47,995 again, if you are in a caregiver position 365 00:12:48,320 --> 00:12:49,679 and you don't have a lot of folks 366 00:12:49,679 --> 00:12:52,080 in your lives who are friends or coworkers 367 00:12:52,080 --> 00:12:54,879 or colleagues, whoever who are also caregivers, they 368 00:12:54,879 --> 00:12:56,980 don't really they might not understand the complexity 369 00:12:57,039 --> 00:12:59,200 of what it's like to to be in 370 00:12:59,200 --> 00:13:01,299 a caregiver role. So I think that community 371 00:13:01,360 --> 00:13:04,095 was able to affirm, okay, we understand what 372 00:13:04,095 --> 00:13:06,334 you're going through because I experienced the same 373 00:13:06,334 --> 00:13:09,214 things. Here's what advocacy looks like. Here's what 374 00:13:09,214 --> 00:13:11,454 boundary setting looks like. Here's some things that 375 00:13:11,454 --> 00:13:14,095 I did for self care and and that 376 00:13:14,095 --> 00:13:17,070 nature. So, yeah, I'm always just gonna be 377 00:13:17,070 --> 00:13:19,330 pro community, which is why I really appreciated 378 00:13:19,389 --> 00:13:20,929 being invited to this space. 379 00:13:21,549 --> 00:13:23,549 Yeah. No. Absolutely. And, you know, I've really 380 00:13:23,549 --> 00:13:25,309 enjoyed your message, and I'm so glad we 381 00:13:25,309 --> 00:13:26,750 were able to bring the Meetings on the 382 00:13:26,750 --> 00:13:28,909 Road energy to the podcast here. For those 383 00:13:28,909 --> 00:13:30,830 who weren't able to attend, like, maybe what's 384 00:13:30,830 --> 00:13:32,774 one takeaway you could offer, what it meant 385 00:13:32,774 --> 00:13:34,215 to be there and, like, the importance of 386 00:13:34,215 --> 00:13:36,294 coming together? Yeah. So I think the main 387 00:13:36,294 --> 00:13:38,375 thing I would think people well, hopefully, people 388 00:13:38,375 --> 00:13:40,695 could take away from this episode they couldn't 389 00:13:40,695 --> 00:13:42,934 attend live is that hope that they're hearing 390 00:13:42,934 --> 00:13:44,475 from this, that they're not alone. 391 00:13:44,809 --> 00:13:46,889 So even if you couldn't attend your stories 392 00:13:46,889 --> 00:13:49,470 or stories still matter, your struggles are valid 393 00:13:49,610 --> 00:13:51,850 and there are community ready and available to 394 00:13:51,850 --> 00:13:53,449 stay with you. So even as you were 395 00:13:53,449 --> 00:13:55,850 introducing this space, when you were talking about 396 00:13:55,850 --> 00:13:58,169 the resources that they're willing to give folks 397 00:13:58,169 --> 00:14:00,225 to come and attend, It sounds like they're 398 00:14:00,225 --> 00:14:01,904 taking a they're taking away some of those 399 00:14:01,904 --> 00:14:04,804 barriers that exist around finances. You know, finances 400 00:14:04,865 --> 00:14:06,945 are really a huge barrier when people wanna 401 00:14:06,945 --> 00:14:08,945 come to community events, especially when they're in 402 00:14:08,945 --> 00:14:11,345 different states. So here here I'm hearing there's 403 00:14:11,345 --> 00:14:13,745 all these resources available to assist you. So 404 00:14:13,745 --> 00:14:15,184 now it's like, okay. How do I just 405 00:14:15,184 --> 00:14:17,399 make, even though if I'm a caregiver, how 406 00:14:17,399 --> 00:14:19,559 do I be intentional about making sure that 407 00:14:19,559 --> 00:14:21,720 I make this space a priority? Like it's 408 00:14:21,720 --> 00:14:23,559 probably maybe it doesn't feel as important as 409 00:14:23,559 --> 00:14:26,059 like a doctor's appointment things, but having community 410 00:14:26,120 --> 00:14:28,759 and having that self care is very top 411 00:14:28,759 --> 00:14:30,379 priority. Like it's very necessary. 412 00:14:32,805 --> 00:14:35,125 Different meetings and groups that they have, seeing 413 00:14:35,125 --> 00:14:36,565 how that you can reach out to get 414 00:14:36,565 --> 00:14:38,725 to the resource that you're able to attend. 415 00:14:38,725 --> 00:14:40,404 And I think other, another thing that was 416 00:14:40,404 --> 00:14:42,004 a takeaway in that space as well, people 417 00:14:42,004 --> 00:14:43,845 were making connections with one another so they 418 00:14:43,845 --> 00:14:46,019 could keep in contact even after they left 419 00:14:46,019 --> 00:14:46,679 that space. 420 00:14:46,980 --> 00:14:49,220 So you don't have to organize event to 421 00:14:49,220 --> 00:14:51,300 build community. You can start with an honest 422 00:14:51,300 --> 00:14:54,259 conversation or one supportive meeting that we supportive 423 00:14:54,259 --> 00:14:55,940 message or meeting that we have talked about 424 00:14:55,940 --> 00:14:56,440 today. 425 00:14:56,820 --> 00:14:58,179 I I love that. And I just wanted 426 00:14:58,179 --> 00:15:00,674 to highlight, like, just imagine walking away from 427 00:15:00,674 --> 00:15:02,195 a Meetings on the Road event with the 428 00:15:02,195 --> 00:15:04,914 phone number of a parent or caregiver who 429 00:15:04,914 --> 00:15:06,835 you can reach out to and know that 430 00:15:06,835 --> 00:15:08,434 you could reach out to in those moments 431 00:15:08,434 --> 00:15:10,355 where you really need the help. Like, did 432 00:15:10,355 --> 00:15:12,389 you have this experience in the doctor's office? 433 00:15:12,470 --> 00:15:14,629 Like or I'm feeling really burnt out on 434 00:15:14,629 --> 00:15:18,250 caregiving. Like, just having those feelings affirmed, right, 435 00:15:18,710 --> 00:15:20,389 is is such an important part of what 436 00:15:20,389 --> 00:15:22,149 this community does. So, you know, thank you 437 00:15:22,149 --> 00:15:23,670 again for your message, and this has been 438 00:15:23,670 --> 00:15:26,565 Boundless Bee, the Hemophilia Bee Podcast, the podcast 439 00:15:26,565 --> 00:15:28,404 standing with you from a family like yours 440 00:15:28,404 --> 00:15:30,884 presented by the Coalition for Hemophilia B and 441 00:15:30,884 --> 00:15:33,285 in partnership with Balancing Minds Issues. When you 442 00:15:33,285 --> 00:15:34,725 decide to come to the Meetings on the 443 00:15:34,725 --> 00:15:36,485 Road event, just go to hemobee.org 444 00:15:36,485 --> 00:15:39,169 for more information on how to attend. Mike, 445 00:15:39,169 --> 00:15:41,809 we were talking about resources are available to 446 00:15:41,809 --> 00:15:43,649 help you get there. And thank you so 447 00:15:43,649 --> 00:15:45,589 much for your time again today, Doctor. Whitley. 448 00:15:46,129 --> 00:15:47,889 Thank you for having me. It's been an 449 00:15:47,889 --> 00:15:50,230 honor to have this conversation with you today. 450 00:15:50,690 --> 00:15:52,424 Until next time, everybody. Take care. 451 00:16:03,544 --> 00:16:05,590 Thank you for listening to Boundless Bee, the 452 00:16:05,590 --> 00:16:08,470 Hemophilia Bee Podcast. The podcast standing with you 453 00:16:08,470 --> 00:16:10,710 from a family like yours, presented by the 454 00:16:10,710 --> 00:16:13,429 Coalition for Hemophilia Bee and in partnership with 455 00:16:13,429 --> 00:16:16,470 Balancing Life's Issues. Produced by me, Kai. Got 456 00:16:16,470 --> 00:16:18,230 an idea for the show? Send us an 457 00:16:18,230 --> 00:16:20,730 email at podcast@hemobee.org, 458 00:16:20,825 --> 00:16:22,504 and don't forget to stay connected to your 459 00:16:22,504 --> 00:16:25,144 community at hemo b dot org. Anything else 460 00:16:25,144 --> 00:16:25,964 to add, Miles?